IntrinsicTina

ALS is a devastating illness to be sure.  It robs us of the use of our own appendages; arms, legs and our heads (but not our brains).  It robs us of our ability to speak and even to breathe eventually.  What possible humor can come from such horror?  The inevitability of our demise hangs over our head.  What's funny about that?  Plenty, depending upon one's point-of-view. Early on, I had been warned away from ladders by my ALS buddies at the support group and agreed to leave the climbing to Rod.  However, auto-pilot kicked in and in my mind, I was able-bodied once more.  I wanted to add paprika to my eggs and automatically grabbed my wooden 3-step Ikea stool.  Bing, bing, bing up I go and freeze.  "Honey?  Will you come help me down?", I warble.  He was not amused. At Christmastime an intestinal flu bug made the rounds and I caught it.  For days I was reduced to a state I can only describe as infantile.  Stuff was...

At long last I have found a source for intravenous glutathione as well as a source of administering.  In our region, we have a famous college for naturopathic medicine, it's not close to me and it's not cheap but I have an opportunity to try it.  Through this college I discovered a provider that also wants to try out homeopathic remedies and also chelation therapy under the assumption that heavy metal toxins may lie at the source of this autoimmune disease.

Out of Neurochondria until the 30th. Same day I should receive the Ubiquinol. Feel like it is none too soon. Keeping stocked up on my supplements is a freaking chore. Thanks to PatientsLikeMe.com I learned where to get Glutathione suppositories as I am stuck for a source for the IV. I hesitate at the expense ($150 + $30 shipping) but will pull the trigger today anyway. Noted that www.WinningTheFight.com is unwilling to allow registrants to share sources which increases our burden. I know they don't want to cross the line into being accused of running a for-profit site but it's a very real dis-service to dangle this potential treatment before our eyes and not allow us to share info to locate the components. It's appreciated that Deanna and Dr. Tedone choose to share this protocol with the world but they seem oblivious to our plight...how to find and have components administered. We are not all blessed with money and connections.

Discovered a slew of my supplements in a bag that my husband packed for an outing yesterday.  Failed the protocol yesterday.  Will I ever get it right? Blew today as well with the AKG capsules.  My ubiquinol didn't show up yet either. Guilt, shame, remorse.

The sun broke through as we wound down back country roads of rural western Washington.  Called my 87-year old uncle to catch up on the past month as my husband drove us (in the Subaru) to the Abate Swap Meet in Monroe, Washington.  Two birds...one stone.  I got to learn all about his seven children and bunches of grandchildren.  All of whom I've never met, including my uncle.  Another blessing of my ALS diagnosis...I guess people want to meet me before it's too late. This was my first public motorcycle event since my diagnosis.  I figured that I'd be in too much emotional pain over not being able to ride a motorcycle anymore.  Fortunately, it wasn't so bad.  We had an agenda, I'm selling my 2006 Harley Davidson Softail Deluxe and I had flyers to deliver as well as family and friends to socialize with.  My brother and sister-in-law are very active in the motorcycle community and we have mutual friends.  This was also my first outing u...

Can't quite call it a fall, but I did a slow-mo sink to the ground while loading up my bookshelf. Tried to recover and ended up flat on my back in front of the entry door. Talked to the cat until my husband tried to walk back into the house. (Oh, the comedic giggles we get to have today!) Once upon a time I would have railed in anger or cried in self pity.  Today, it was total acceptance.  Well, what else could I do?  On my knees next to my walker, I attempted to crawl back up.  No dice!  I pushed it away and went to hands and knees to discover the arms without strength and I did another slo-mo as my face touched the tile entryway.  Well, this is new, I thought.  Uncomfortable facedown on the cold tile, I worked my way onto my back.  The cat was delighted!  Her little face loomed over mine and her whiskers tickled my face. "Well, it's you and me, Grace, and I sure wish you could open the door or call somebody."  She couldn't.  S...

Began my day in the usual manner, awaken (rolling over to grasp the bedside grab bar to assist) align my hips and kick my legs out to rock up to sitting position, toilet (with or without help depending on energy and bedclothes), swallow a bunch of capsules and tablets (supplements) with water, sit down to apply my make-up in a modified routine (using built-up brushes and powders - still using Mary Kay Cosmetics for the most part.  Also a handicap shower chair at the open sink cupboard for my feet serves as my make-up table).  Husband mixes up my AAKG powder with juice and sets me up with breakfast, usually yogurt or warmed-up steel-cut oats.  I sit down to eat.  No longer  capable of eating on-the-fly.  Each bite is an effort to raise my fat-handled curved silverware to my mouth (with my non-dominant left hand) and then I must be mindful to chew and swallow with great care lest I choke or my swallow mechanism misfires.  Go back to brush my teeth with t...